Telephone-Based Behavioral Activation for Improving Sleep Quality in Family Caregivers of People With Dementia: A Pilot Randomized Controlled Trial

Sleep disturbances are common among family caregivers of people with dementia (PWD). Although behavioral activation (BA) shows the potential to improve sleep quality, to date, evidence for this treatment’s feasibility and efficacy for family caregivers of PWD is limited. Therefore, this study pilot tested an evidence-based BA protocol for improving sleep quality in Chinese family caregivers of PWD. The BA intervention involved eight weekly individual telephone-based sessions designed to teach caregivers specific BA techniques. Sleep quality and depression were measured using the Chinese versions of the Pittsburgh Sleep Quality Index (PSQI) and Center for Epidemiologic Studies Depression (CES-D) Scale, respectively. This study also measured leisure activity, positive aspect of caregiving, caregiving burden, health status, and relationship satisfaction. All participants were asked to complete the assessments on paper at baseline and immediately after the intervention. After completing the pilot randomized controlled trial, semistructured interviews were conducted to explore participants’ experiences participating in the BA intervention. A total of 71 family caregivers of PWD (35 in the intervention group and 36 in the control group) were recruited. The majority of participants were female (n = 53, 74.65%), and their mean age was 54.07 years (SD = 10.95). Compared with controls, caregivers in the intervention group displayed significantly greater improvement in sleep quality, as well as perceptions of positive aspects of caregiving and reduction of depression. Most participants were very satisfied with the intervention. These findings suggest that individual telephone-based BA interventions are feasible, acceptable, and effective in improving sleep quality and psychological health in family caregivers of PWD. These results contribute to the literature by providing evidence for developing effective, accessible, and sustainable BA interventions for family caregivers of PWD.     

Predictors of depression in caregivers of dementia patients: boundary ambiguity and mastery

This study examined the role of two perceptual variables in predicting the development of depressive symptoms in caregivers. The first, boundary ambiguity, refers to whether the dementia patient is perceived as psychologically in or out of the family system. The second, an orientation toward mastery, is related to how persons manage various stressful situations, including caring for a dementia patient. This study included 70 patients and their caregivers. Stepwise regression and path analytic techniques were used to compare the impact of variables related to the illness per se and of variables related to caregivers' perceptions of their situations. Results indicate that both perceptual variables, boundary ambiguity, and mastery, are significantly related to a caregivers' depression level whereas severity of the patient's dementia is not. In sum, the more a caregiver perceives a mate as psychologically absent, the less masterful and the more depressed she or he is.     

Faith-to-faith at the bedside: theological and ethical issues in ecumenical clinical chaplaincy.

Chaplains who serve in a clinical context often minister to patients representing a wide variety of faiths. In order to offer the best pastoral care possible, the chaplain should first possess a set of personal theological convictions as a foundation for ministry. Second, he or she needs to be sensitive to the beliefs and practices of the patients. Third, it is vital to develop a relationship of acceptance and trust not only with patients under their care, but also with family members and caregivers as well. At times, situations will arise that are purely religious or theological. In a clinical setting, however, the questions and problems that arise more often are both theological and ethical. It is beneficial for the chaplain to be involved in an ethics committee, where the specifics of each case can be discussed, and staff can offer counsel to patients and their families. This study examines issues that chaplains face at the bedside, such as terminal care, life-prolonging treatments, dementia, persistent vegetative state, and euthanasia-assisted suicide. We will discover that those who are involved in clinical pastoral ministry will be called upon to be a comforter, mediator, educator, ethicist, and counselor.     

The clergy as advocates for the severely demented

The author sets forth the argument that pastoral caregivers ought to consider expanding their traditional role of ministering to dementia patients by pressing the issue of whether appropriate medication might significantly lessen the suffering of these persons. After discussing and documenting the current understanding regarding the nature of pain, the author outlines several advocacy, ethical, and procedural issues that could be included in providing pastoral care to this population, at the same time not miminizing more traditional faith-based activities.     

Caregiver burden and family functioning in different neurological diseases

Aim of this study is to examine caregiver burden and family functioning in different neurological conditions. Forty-two primary caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s Disease and other dementia (AD), Parkinson’s Disease (PD), Acquired Brain Injuries (ABI) and Multiple Sclerosis (MS) were administered scales for the evaluation of caregiver burden (CBI) and family functioning (FACES IV). Caregiver burden was overall high, with caregivers of patients with ALS and ABI having exceeded the CBI cut-off score for possible burn-out. The average scores of caregivers of patients with AD or other dementia and PD were close to the cut-off score, whereas those of caregivers of patients with MS were significantly lower than the others. Family cohesion, family satisfaction and the quality of family communication were associated with reduced levels of caregiver burden, whereas disengagement was associated with a higher burden. The data from the present study confirm that caregiver burden is a relevant issue in the context of neurological diseases, especially for those causing higher degrees of impairment. Significant correlations with family functioning emerged as well, highlighting the importance of studying and treating caregiver burden within the context of family relations.     

Dementia caregiving: recent research on negative health effects and the efficacy of caregiver interventions

Provision of care to an older adult with dementia is an important societal resource. This resource may also come at a high cost to informal caregivers, most of whom are family members. In this paper we provide an overview of recent research on dementia caregiving and caregiver interventions. First, we provide background information on the prevalence and costs of Alzheimer's disease and related disorders. Second, we describe the specific stressors and broader mental and physical health outcomes of dementia caregiving. Third, recent evidence of the efficacy of caregiver interventions for both caregiver and patient outcomes is reviewed. Throughout the paper, we describe promising new directions for future research in this area, including assessment and intervention with family caregivers of older patients with comorbid dementia and depression, and the focus on sleep disturbance as a critical health consequence of dementia caregiving.     

Where there's life,There's hope,and where there is hope,there is...

Using the Hearth Hope Index, we describe the level of hopefulness among hospital patients and compare it to that reported by community persons and family members in a surgical waiting room. We also correlate these results with depression and self-esteem scores. As measured by these selected instruments, the results suggest that the level of hopefulness is not significantly different among the three samples, that it is positively correlated with self-esteem and negatively associated with depression, and that, among the demographic variables, only the respondent's age and frequency of attendance at worship significantly influence hope scores. The results suggest that pastoral caregivers can encourage hopefulness among those under their care by bolstering self-esteem and giving attention to depressive symptoms. They also suggest that those who need the most pastoral support are younger adults with limited education. Pastoral caregivers can use these results, we think, to inform their work in giving pastoral care.     

Caregivers Dependent upon Drivers with Dementia

This paper reports findings of a preliminary study of caregivers dependent upon drivers with dementia. Fifteen caregivers who perceived themselves as dependent upon their partner for transportation and 15 who perceived themselves as independent were surveyed. Dependent caregivers were significantly more likely to rely on the cognitively impaired driver for routine daily activities such as shopping, medical appointments, and visiting family and friends. Only 20% of the dependent caregivers believed that the driver with dementia should decrease or discontinue driving. Dependent caregivers were less likely than independent caregivers to take an active approach in encouraging driving cessation. Compared to the independent caregivers, the dependent caregivers believed that if the patient with dementia could no longer drive, it would significantly affect their quality of life. The authors discuss the issues and problems uniquely associated with the dependent caregiver.     

Stories of family caregivers of people with dementia in Greece: Implications for counselling

A substantial body of literature has identified high rates of burden, psychological morbidity, social isolation, health and financial difficulties among dementia caregivers. The present qualitative study adopted an Interpretive Phenomenological Analysis approach in order to explore the lived experiences of dementia family caregivers within the Greek sociocultural context. The sample was purposive and consisted of 10 women dementia family caregivers from Athens and Thessaloniki. Individual in-depth interviews were conducted and analysed according to IPA. The participants’ personal accounts included themes related to ethical/existential and cultural aspects of family caregiving; changes in family relationships; impact of the caregiving experiences; sources of support and help seeking; positive and meaningful aspects of the care experience. The research findings are discussed in the context of Gilligan’s moral psychological theory, and cultural dimensions of family caregivers. Implications for counselling interventions aiming at supporting caregivers are presented.     

Counseling those who care for a relative with Alzheimer's disease

Seventy percent of an estimated four million Americans suffering from Alzheimer's disease remain at home, cared for by a family member. Because of the stress involved in this role, these caregivers are vulnerable to financial, physical, and emotional losses. Some caregivers cope well under the stress; others do not. This paper is aimed at how pastoral counselors might enhance the coping strategies of these caregivers.     

Latent growth models of the longitudinal effects of dementia caregiving: a comparison of African American and White family caregivers

Self-report measures of depression, physical health symptoms, and life satisfaction were collected over a 2-year period from 197 family caregivers of dementia patients and 218 noncaregivers (controls). Latent growth models were used to compare changes across time for African American and White caregivers, with gender, age, and socioeconomic status serving as covariates. Results indicated that White caregivers sustained higher levels of elevated depression and decreasing life satisfaction over time compared with African American caregivers. Both groups of caregivers reported increases in physical symptoms over time. These results indicate worsening difficulties over time for many White caregivers. African American caregivers show more resilience on measures of depression and life satisfaction but are still vulnerable to increases in physical symptoms over time. Implications for additional research and clinical intervention are discussed.     

Representing the Good: Pastoral Care in a Secular Age

In ‘a secular age’ (Taylor 2007), pastoral care is no longer exclusively associated with specific religious traditions and communities. Pastoral caregivers who work in secular institutions provide care to religious and nonreligious people alike, and in several Western societies the term pastoral care is used in relation to nonreligious (humanist) care. In secular contexts, the term ‘pastoral care’ is often replaced by the term ‘spiritual care.’ Spiritual care, however, is provided by various professionals, so pastoral caregivers face the challenge of developing adequate and convincing language to explain what is distinctive about their work. In this article, the authors turn to philosophical language in order to develop a conceptual understanding of pastoral care that does not depend on the specific worldview—religious or nonreligious—of either pastoral caregivers or receivers of pastoral care. Using the work of Taylor (1989, 2007) and Murdoch (1970), we explain pastoral care as engaging with people’s attempts to orient in ‘moral space’ and the distinctive quality of pastoral care as ‘representing the Good.’ Murdoch associates ‘the Good’ with a secular idea of transcendence that is both a movement beyond the ego and an engagement with the reality of human vulnerability, suffering, and evil. We argue that pastoral caregivers who ‘represent the Good’ have the task not only of supporting the existential and spiritual processes of individuals but also of promoting dialogue and social justice and of critiquing dehumanizing practices in the organizations in which they work and in society at large.     

Political Dimensions of Pastoral Care in Community Disaster Responses

All caregiving takes place in multiple political contexts and assumes or actually furthers various political agendas, whether acknowledged or not. When strategically incorporated into pastoral and spiritual care, politically responsive actions may enhance the practice of care. When disaster strikes a community, ritual engagement of the larger public context provides a significant opportunity for pastoral caregivers to function as public pastoral theologians and to influence the corporate response to communal challenges. In these circumstances of community vulnerability, pastoral caregivers and communities of faith are positioned to provide spiritual care that combines solace and safety for the victims with guidance and shaping influence on the ritual practices and rhetorical interpretations called upon to assist the community to endure, respond, and heal. This article examines some central political aspects of the pastoral caregiver’s repertoire that might further a stricken community’s ritual and rhetorical resources necessary to sustain life, share loss, reclaim goodness, and rebuild for a strong future. Drawing upon a view of lamentation as a tri-partite process of sharing anguish, interrogating causes, and reinvesting in hope, I suggest how the spiritual and pastoral caregiver may collaboratively participate in a “disaster-response matrix” that organizes corporate responses to catastrophic disaster. This article pays particular attention to macro-, meso-, and micro-level political negotiations necessary to ensure respect for diversity and shared responsibility in creating rituals, memorials, and public narratives at the onset of disaster and in its aftermath over the generations. Illustrations from the experience of religious caregivers at Columbine, Hurricane Katrina, 9/11, Aurora, Newtown, and Boston are presented to guide pastoral engagement of civil society in disruptive times.     

Building Resiliency in Dyads of Patients Admitted to the Neuroscience Intensive Care Unit and Their Family Caregivers: Lessons Learned From William and Laura

Sustaining a stroke, regardless of its severity, is a life-changing and often traumatizing event that can lead to chronic depression, anxiety, and posttraumatic stress in both survivors and their family caregivers. Psychosocial interventions for emotional distress after stroke are limited, have emphasized psychoeducation rather than skills, treatment of chronic emotional distress rather than prevention, and have targeted either the patient or their caregiver without accounting for the context of their interpersonal relationship. Here we discuss “Recovering Together,” a novel program for dyads of patients with stroke and their family caregivers aimed at preventing chronic emotional distress by using cognitive behavioral principles to teach resiliency and interpersonal communication skills beginning during hospitalization in a neuroscience intensive care unit and continuing after discharge via telehealth. We illustrate the case of a pilot dyad enrolled in the Recovering Together program, to showcase how patients and caregivers can engage with and benefit from it. This dyad’s experience suggests that Recovering Together is credible, feasible, and useful. The potential dyadic benefit of this intervention lies not only in providing the opportunity to optimize recovery and prevent long-term emotional distress, but also in creating the space to come together as a pair and make meaning from critical illness.     

Teaching Theological Reflection Well,Reflecting on Writing as a Theological Practice

Abstract. In order to teach theological reflection well, it is necessary to teach students how to write it well. This paper probes the writing of theological reflection as a rhetorical process and a theological practice by (1) situating theological reflection broadly within a “correlation” model, adapted for theological writers; (2) identifying two “generic” styles of theological reflection papers, the pastoral reflection paper and the systematic reflection paper; (3) following a writer's progress as she writes a one‐page pastoral reflection paper and constructs a working theology in the process of writing it. In conclusion, the correlation‐based “Reflecting on Paper” process provides a pedagogical bridge between the writing and teaching of “pastoral” and “systematic” theological reflection, and exemplifies the dynamic interplay between teaching theological reflection and reflecting on writing as a theological practice.     

阿尔兹海默氏症患者的家属照顾者(隐形的病患)健康状况探讨

台湾地区有超过91.5%的阿尔兹海默症照顾者为家庭成员。他们平均对轻度、中度和重度此症患者的全部照顾时间为2166、4299和5871小时。根据一项以“中国人健康问卷”所做的调查,照顾者身体健康状况平均值为2.73(标准差0.85);心理健康状况平均值为2.74(标准差0.8);社会健康状况平均值为2.98(标准差0.78);在压力的排序上以情绪上的压力和困扰为最高(3.02)。这些数据显示照顾者的身心健康已受到严重的负面影响。因此,照顾者应该首先照顾好自身,才能给予被照顾者亲属更好的必要照顾。     

Spiritual Tools for Enhancing the Pastoral Visit to Hospitalized Patients

The tradition of visiting the sick is a practice that brings comfort to patients who are suffering, offers prayers for healing, and keeps the connection with family and community alive. It is a practice recognized from ancient times through today, one which underscores the mission of the field of Pastoral Care. This paper describes the creative use of multi-sensory spiritual tools, such as music, singing, personal prayer, psalms, and traditional texts, to enhance the sick visit to the hospitalized patient. This brief structured model is replicable and teachable to lay and professional caregivers. Both patient, family members, and caregivers can benefit from sharing in these moments of inner spiritual attunement and connection with others. Israela Meyerstein, LCSW-C, LMFT, is a social worker and family therapist in private practice in Baltimore, Maryland. An Approved Supervisor for the American Association for Marriage and Family Therapy, Ms. Meyerstein has trained therapists of all disciplines and has published over two dozen articles relating to Family therapy, medical issues, and spirituality. She is co-founder of the Baltimore Jewish Healing Network. Correspondence to Israela Meyerstein, Imeyerstein@hotmail.com. Gila Ruskin has served as a congregational rabbi, psychiatric hospital chaplain, adult and day school educator, and pastoral counselor. Rabbi Ruskin currently teaches Bible, Holocaust Studies, and Creative Writing at the St. Francis Academy in Baltimore, Maryland. She is co-founder of the Baltimore Jewish Healing Network.     

The Abuse of Power: A View of Sexual Misconduct in a Systemic Approach to Pastoral Care

The article explores the dynamics of transference and countertransference in hierarchical relationships which exist between clergy and lay persons, both in the parish setting, as well as in the pastoral counseling relationship. It is of utmost importance that the power differential be consciously acknowledged by pastoral caregivers so that appropriate boundaries can be exercised. All too often it is the negligent, careless, or unconscious disregard for this power dynamic by individuals providing pastoral care that has led to the sexual violations recently surfaced within our religious institutions. Acknowledgement of the imbalance of power, and its consequences for both clergy and parishioner, is essential in a systemic model of pastoral care.     

Becoming Sanctuary

During times of illness, caregivers become sanctuary to the one who is without sickness. Reflections from clinical cases are interwoven with theoretical concepts from Process Philosophy, Jewish and Christian Theology, and Ethics. The immanence of God/Buddha/the Divine Being with us in our time of suffering is explored. Sanctuary manifests compassion through a pastoral practice of deep listening that hears the ill person into speech. Sanctuary is protection from the life-saving medical technology used in response to illness, the painful symptoms that impact both patient and caregivers, and the anxiety of loving family members. Sanctuary restores and protects relationships during the last days and hours of our lives.